When I began arranging my wedding to Freddies dad I knew we would never get the typical relaxing honeymoon most people go on to have after their wedding. I knew we wouldn’t be able to find anybody to care for Freddie while we were gone. We still don’t have respite in place properly and his needs are too complex to ask any friends/family to care for him for such a long period of time.
So I thought we could turn our honeymoon into a family holiday. Going abroad would be too hard with Freddie so we settled for a popular caravan resort in the lake district.
The packing was hard, Freddie really doesn’t travel light! His meds, syringes, feeding pump and other bits & bobs filled a whole suitcase alone before I even started on his clothes and his pushchair filled the entire boot space.
The car journey was standard. Freddie screamed the majority of the time, mickey mouse on the ipad eased it a bit but 2 hours of Freddie crying isn’t the best start to a holiday.
Unfortunately the holiday didn’t get much better. The problem with disabilities is that you don’t get a holiday from them. We can’t just turn off Freddies problems so we can relax & enjoy our holiday. It was very hard to enjoy yourself with such a demanding child needing you for every aspect of care.
The meds, tube feeding, nappies, feeding, dressing, cleaning side of the jobs kept us busy but they didn’t cause much stress, they are done very routinely & after 2 years we plough through them quite quickly now. The hard part was Freddie’s overall behaviour. The constant crying, whinging and trashing around, the behaviour that I don’t understand. Trying to satisfy a childs needs when they can’t speak is hard. I guess hes crying for food so I offer food, but food makes him more angry, maybe sleep then? So I put him to bed but he then becomes more hysterical in his cot. It’s a battle thats very hard to win.
Every car journey he cried, we tried to enjoy sightseeing in the lakes but it became impossible to use the car too much as Freddie just became too upset.
We had to ensure we were back at the caravan at lunch time so we could allow Freddie to have a few hours sleep so activities had to be limited & we did miss out on a lot of things we wanted to do. Evie loves boats & trains but we unfortunately couldn’t fit these in around Freddies naps.
He didn’t cry all the time tho and we did have some nice times. With the help of the ipad we managed to enjoy some tea in a few of the local cafes and we visited the aquaium. We also went out and found a childrens play area & there was a bouncy castle & trampoline. Evie was in her element while Freddie sat in his pushchair. I don’t think it gets any easier watching one child play alone when you know they should both be there together but we were on holiday so we tried not to dwell.
I watched on as Evie jumped around on the bouncy castle with the biggest smile on her face. Then a little boy climbed on & joined her. I knew he must of been about the same age as Freddie. I felt the familiar stab of pain in my heart as i watched this little boy jumping around with Evie knowing this is what Freddie should be doing. I looked around seeing other parents relaxing at tables with their drinks watching on as their children entertained themselves. The type of holiday many families go on…a relaxing one.
The stress with Freddie was heightened when he began being sick one night & I spend a good few hours cleaning him up & trying to comfort him. We did think we may have to cut the holiday short as the sick was quite bad but the next morning he seemed fine.
Most of out holiday was spend tirelessly seeing to Freddie. I have definatley come back off this holiday needing another holiday just to recover.
There are so many obstacles that made simple things hard. Feeding time was an issue as the highchair provided wasn’t supportive enough for Freddie & bedtime was awakward as Freddie is getting too big for a travel cot so he was a bit cramped up trying to sleep in one.
Having 2 children with such different needs is very hard to cater for at the best of times but on holiday it seems to become harder. There were activites like mini golf & archery or childrens play areas that Evie wanted to do but none of which was suitable for Freddie so the family holiday we planned became not so much of a family holiday but 1 parent with Evie & 1 sat with Freddie. A family split in half by the childrens different needs.
I can’t see us taking Freddie away on holiday again any time soon. A child like Freddie is hard enough to deal with on a normal day at home but when taken out of our environment and away from our equipment it’s made alot harder and not really worth the stress.